Living with alopecia

I am doing NaBloPoMo this month. 30 blog posts in 30 days. You can read more about it on San’s blog the in between is mine. #nablopomo2022

No hair, don’t care

The title of this post sounds more dramatic than it is for me. If you see pictures of me you will likely see me with a hat or a scarf on my head. If you would see me in real life you would realize pretty quick that I do not have hair.

I am even not sure anymore when it started but I must have been around 15 or so. It was not very dramatic at first. I did not suddenly loose huge amounts of hair but at some point there was no denying that I had spots that just did not grow hair anymore.

It took a couple of doctor’s visits before I received the diagnosis through the hair ambulance at the University hospital in Hamburg that I had indeed alopecia areata.

In a nutshell alopecia is an autoimmune disease where my own immune system attacks my hair follicles in some areas and there is no hair growth anymore. There is:

  • alopecia areata where you have bald patches somewhere on your body
  • alopecia totalis where you lose all hair on your scalp
  • alopecia universalis where you lose all hair

If you have a parent with the disease you may inherit it or you may not. My dad has it, too but I am the only one of my siblings who does. In most cases the hair grows back, sometimes it does not. There are some medications that may help but they may not. When I was first diagnosed I tried a couple of things including a medication that required monthly trips to Hamburg for a blood check-up. I still remember those trips because it was on Fridays and I had to take the day off from school. I had the best time with my mom on those days going to the big city. Alas the medication did not help and the patches actually grew bigger over time.

I can’t remember exactly how I felt about it. I had good friends who did not mind, I had a boyfriend with 16 who loved me for who I was. When I lost my hair I did not care that much about fashion and I had time to ease into it. I was okay. Not okay to the extend that I embraced it or to not try to hide it with long hair and hats which became kind of my trade mark. When there was no way of hiding it anymore I did get a wig in my early 20s. It never felt quite right.

In my mid 20s I broke up with my boy friend of six years and started over. That was the point when I decided I would shave off whatever was still left of my real hair and leave off the wig. I kept thinking that I would not want to explain to a new love interest that “oh, by the way, this hair is not real and in fact I am bald”. I am happy to report that not one person reacted in a negative way – the opposite was the case. Hats became a daily part of my outfit. The styles changed a little over the years form berets to newsboy hats to scarfs. I feel a little naked without any. It’s not so much that I feel embarrassed without, it’s just something I am used to (and honestly some days it’s a little cold or a little to sunny).

I will come across people from every once in a while who think I have cancer. All of them are relieved to hear that it is “just” hair loss and nothing more serious. Even though I never quite understood why you would tell a stranger that you hope they will recover or that you pray for them if you don’t know at all what is going on in their life. I do not want to hear things like “Oh, there are so nice wigs these days. Why don’t you get one of those?” Inappropriate, my choice! And yes, I heard it before.

I sometimes feel wistful and a little relieved if my friends talk about their adventures in hair cuts. I believe hairloss can be very traumatic for some, especially if you feel that your hair is one of your best features. This is my story and I can’t speak for everyone. All I am saying is that you can be happy without hair, that there is beauty in that, too. I would wish for a world where appearance does not matter that much in general. Not because I am not feeling beautiful but because I think we all would be much happier if we would not feel judged for how we look like all the time.


13 thoughts on “Living with alopecia”

  1. What a fascinating post! I have to admit I have never heard of alopecia areata. I also think it’s wonderful you’re being so open about it because I imagine for some people it would feel devastating and/or embarrassing. We’re so conditioned to imagine all women with hair – of course this isn’t the case! Hair does not equal happiness and this post is a wonderful testament to that fact!

    Liked by 1 person

    1. Thank you!I think man are in the same boat when it comes to this- you might be surprised (my dad wore a wig for most of his life) but yes, especially women will care about their hair a lot (and I may, too, if I had any).


  2. Great, great post. I think shaving your head and being confident with that is more attractive than wearing a wig and being self conscious. (Although- that sounded kind of judgmental- I’m sure people have different reactions to this and some would be more comfortable with a wig.) Oh and by the way- cute haircuts can be fun, but hair can also be a pain. I have days where I would love to just wear a scarf or hat. It sounds like you’ve embraced this and are comfortable with who you are… and hair really has nothing to do with it.

    Liked by 1 person

    1. Hair definitely sounds like a pain when I listen to my friends and families conversations (at least it can be). You can always start wearing hats or scarfs – hair should not stop you ;).
      At first I was not sure how to write this in the beginning and I hope it does not sound to much like I recommend everyone should cut off their hair when they have alopecia. Everyone should do what makes them feel good but hair does certainly not define you as a person.


  3. Thank you so much for being so open and sharing your journey with alopecia. (I think the first time I actually heard of it was when Jada Pinkett Smith went public with it last year.) I think it’s wonderful that you feel so comfortable in your own skin and that hats/scarves have become your accessories of choice!

    Liked by 1 person

  4. Wow! Thank you for sharing. I do not know anyone who suffers from this, but my husband is bald (male pattern baldness is absolutely different) and I honestly don’t remember the last time I saw him outside without a hat – the risk of sunburn is too great! So I absolutely get why you have a huge selection of hats and scarves!
    I’m glad that the response you’ve had is mostly positive or neutral. It must be terrible to feel like you have to educate other people like you’re doing here. I’ve read a tiny bit about alopecia and it doesn’t seem like there’s a lot of pain associated with it, but are there other symptoms that you have besides hair loss? Is it correlated with other illnesses? Ugh. I feel like I should just look it up, but it seems like your experience is probably different from other people’s and I’m curious how it impacts your day to day life, if at all.

    Liked by 1 person

    1. No, there is no pain. For some there may be emotional pain and I remember one of the treatment being painful because it involved a tincture that was supposed to increase blood flow to the scalp. It burned like crazy and I don’t recommend it. I also have dry eyes and my ophtamolist was saying that it may be associated with not having that many eye lashes. But it could have happened without the alopecia, too. I guess I will never find out for sure if the two are related.


  5. Great post! I don’t know much about alopecia, just that one of the hosts on the Great British Baking Show has it, and Jada Pickett Smith. Very interesting to learn more about it, and eye opening.

    Liked by 1 person

  6. Thank you for sharing your story! I’m sorry that you have had to deal with comments wondering why you don’t wear a wig. That’s such a personal decision!

    The first time I heard about alopecia areata was in a book I read as a kid. I can’t remember the name of the book now, but the main character had it and was coming to terms with it. I feel like hair, especially as a woman, is such a fraught topic and I’m glad you’ve been able to embrace living without hair and what it means for you.

    Liked by 1 person

  7. Thank you for sharing more about your alopecia and how it has (and has not) affected your life. I have loved seeing your hats & scarves in your pictures, and think they are definitely part of your look. But also? People who make unsolicited comments/suggestions are… yeah, really really far down on my list. WHY, people?!?! It is NONE of your business. It’s one of the things that gets me really riled up, honestly. So I am especially appreciative of how you deal with them. You are a more patient person than I, clearly…

    Liked by 1 person

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